Celebrating Black Disabled stories

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Hi everyone, Audrey from Young Minds here. On today's episode of What's On Young Minds,

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I have the honour of quite literally passing the mic as this episode

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centres Black disabled experiences. You'll hear from Femi, a filmmaker who loves nothing more

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than telling and amplifying unrepresented stories and two guests we've got Sumi,

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a professional writer, performer, public speaker and disability rights activist,

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and there's also Jaleel, a freelance illustrator with a love for comics, character design and

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storytelling. I really hope you enjoy the show and why not join in the conversation with us via

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social media and let us know what you thought of the show. As always, show notes can be found on

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our website as well as our amazing resources to get help with your mental health.

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Hiya, welcome to What's On Young Minds, a mental health podcast by and for young people.

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My name is Femi, I'm a Black disabled filmmaker and I'll be hosting today's conversation.

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Joining me today are Semi and Jaleel. Do you want to just give us a little intro?

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My name is Jaleel, my pronouns are she's a and I am a illustrator.

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My name is Semi, my pronouns are she, her and I am a writer, performer and disability rights

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activist. Great, amazing, thank you. So I thought I'd just kick this off with some kind of like

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finish the sentences. So I just wanted to start off with the first one, which is when I first

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started to come to terms with my disability, my biggest fear was... I think for me, it was the way

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that other people would view me because when I was starting to come to terms with my disability

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and accept it, I knew that I wasn't any of the ablest stereotypes people assume. I knew that I

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could speak for myself, that I had autonomy and all these things, but I knew that no matter what I

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did, no matter how sure of myself I was, no matter how much I walked down the street, like, yeah,

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like, yes, slay, I still knew that people would see something even less than humans sometimes

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when I walk by and nothing I could do would change that. And that terrified me because I was on my

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journey towards acceptance and I was like, but what can I do to stop that? And I had to realize

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that there's nothing I could do to stop it, that other people's ignorance is really their

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responsibility to handle and deal with. It's their responsibility to educate themselves and

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not think that way. And it's my responsibility to just live my life as confident as I am. And

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that's on them if they're ablest or ignorant.

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Period. What are you doing now?

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I think the main thing I always was worrying about was the sense of failure. Because for me,

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I became disabled right in the middle of uni. And I just turned 20. And for me, it was kind of like,

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I've only just kind of started to find myself already off like, you know, puberty and secondary

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and all that. And I'd finally find myself. And then it was kind of like, what do I do now? I was,

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I think for me, it was the sense of, it was that internalize ables of, oh, I've failed at life now

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because I can't do what I used to do. I'm not going to be able to succeed. I'm not going to be able

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to have all these milestones that everyone else around me is getting. That's not going to, that's

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not planned for me. This is not, I don't have control. And I was generally like that.

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I just felt like I was failing because I have had this pride that, oh yeah, I can succeed. And I was

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really good at that. And then now I don't feel like I'm good at that anymore. And it took a very long

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time to change that mindset. Like there's not really a set, there's no failure. You don't fail at life

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when you know, you, this something like this happens, you just do life differently.

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I feel like I've got like a mixture of both of what you said, because I first kind of became

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chronically on my teens and like I was, you know, a young man going through puberty. And I was like,

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I was like, I want to be this big strong man. And I was, I think I was training in karate at the

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time. And I had these dreams of mastering like five different martial arts and being a stunt

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actor and all these things. So I think at first there was that, will I be able to achieve that?

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But then it was also like, how am I going to be perceived by everyone, like including my family

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as someone growing into a young man who at that point wasn't amounting to what people told me

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I had to be. And I think as time went on, then it was more independently like,

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what of the things I've said I want for myself, can I still do? And my fear was, I guess generally

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just like my brain accrated giving those things up to not having a good life. And it took me a

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while to be like, okay, maybe there's certain things I can't do or certain things I can't do in

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the way I want, but there's other things I can do. So it doesn't mean just because I might have to

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let go of things that I can't enjoy my life. It just means, it's like you said, just have to like

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live life differently.

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How do you think you guys got to that spot? Because I didn't really have the experience of being like

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maybe non-disabled beforehand. And from what I've heard from some people who are non-disabled

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beforehand, they kind of have more of that internalized ableism than people who necessarily

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weren't. So like you mentioned, you reached that spot and you did as well. Like how were you able

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to get there then?

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I think for me, it's learning new joys of life and all like keeping the joys I had,

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but just do again, doing it differently. Because like for me, I think like, and a year into like

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after my diagnosis, I was kind of trying to find myself and then COVID hit. So from there, it was

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like, okay, well, I don't have socialization because that was something I was realizing that I kind

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of did need. I still need my friends and I feel like when I'm with my friends, I'm more myself.

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I can still be me. That's not, it, regardless of my disability, I still, I'm still have that

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personality inside myself. But when COVID hit, I was like, okay, well, what do I do now? And

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for me, it was finding other people with chronic illnesses and disabilities online, like on

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Twitch or Instagram or stuff like that and being able to talk about stuff. And I was like, oh, yeah,

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people relate. I'm like, okay. And it's also seeing people as well, because people are obviously

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posting online. And I think, again, seeing people with mobility aids or people who also have like

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symptoms that I have and not feeling like you have to not feeling like it's a bad thing. Like,

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yeah, sometimes I'm gonna have to just be in bed. Some days I'm just gonna be in my pajamas. Like,

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it's okay. That is an okay thing. And I think seeing people talk about it made me like, okay,

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this is fine. This is not wrong. This is just me now. And that's how I kind of gradually,

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over the years, have kind of just kind of just accepted like, this is okay. Like, this is fine.

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Like, I can, I'm still, you know, I'm still here. I'm still doing great stuff. So,

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me five years ago, I can tell like them, yeah, you didn't, you didn't fail. You definitely did not fail.

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I think I relate to that. And for me, I think again, it was like the pandemic where I ended up

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pretty ill in the pandemic and I was separated from my friends. And I remember just having this

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moment where I said to myself, like, I just deserve to be happy at any point. And I don't want to reserve

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the prospect of happiness when I'm at my best. And that then got me to a point where I was like,

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you know, in bed, I was like, if I'm in bed and I can't do much, what will make me happy? Will it be

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just binging something on Netflix? Will it be just looking outside staring at my God? And will it be

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culling with my dog? It was, I think redefining almost everything in this, this new kind of

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experience and being like, okay, but I can still have these feelings because I think it was like

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the end goal, like I can have joy and I can have love and I can have belonging. But it might just

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mean that the way to get there is different. But from there, I kind of just wanted to go on to

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a next question. And here's another finish to sentence, which is for me, Black disabled joy is

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freedom. I feel like it is just truly being free in yourself and like

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free in yourself, free to do what you want to do with no limitations, not feeling like

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the society's limitations are truly your limitations. And you know, you be happy in

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yourself, be happy in your skin, you know, embracing what makes you different because

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I feel it is a good thing to be different. It makes you unique in your own life experiences.

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So I feel like, you know, having that freedom that I can just, I still can do whatever I want.

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So yeah, I said freedom. I'd say for me, it probably is an embracing of our culture.

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And I think in order to do that, you have to kind of grip your mindset, which I think is a little

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bit what you were mentioning, where you have to let go of like the non disabled assumption that

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the way we do things is wrong. That like, I had to accept one of those ability to write my fingers

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that, you know, I can write with a pen in my mouth. And that's not wrong. That's just different.

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And feeling vibrations of music instead of listening with your ears isn't wrong. It's just

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different. And stimming and you're like everything of how we interact with the world is, it's

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different. Like we move through Crip time, it is like this concept where time moves through our

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body differently. And like it doesn't necessarily abide to like a capitalist mindset or anything,

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but it's just an acceptance of some days we lie in bed. Sometimes we struggle to do things as

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fast as one disabled people do. But that's fine. We're doing it in Crip time. This is how we do

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things. And it's just an acceptance of that. And then once you have that, you can celebrate

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disability culture and see the beauty in the different ways that we do things. And like how

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a wheelchair dancer moves across the stage, or someone can blind sign language with dance

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movements and to express their emotions. And you just embrace that and see that this is beautiful.

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And it may not work the way the rest of the world works. But that's what makes it so

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beautiful and unique in that way. Yeah.

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Oh, that's so beautiful. Yeah, for me, I think I'd say honestly, like from the get go, it is

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acceptance and it is home. And I mean, there's such a beautiful thing about being black and

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disabled, because it's like you say we have so much culture to pull from. And I have fond memories

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of like being a kid and going to parties like as I'm Nigerian, like these crazy weddings. And

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there was always someone even if it was just someone a bit elderly who maybe couldn't move

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the same or dance the same, but they were still there and they were still accepted. And that's

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something I was trying to carry forward. And it's something I've noticed now is you can still do

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some things if there's that like, safe space or accommodation. And I think especially for me,

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like with the culture of growing up, and it's being able to party in a different way, being able

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to enjoy our food in a different way, how we dress and it's really important to me as well as my

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walking stick. Like anytime I take a picture of a fit on Instagram, the stick is there,

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because that's part of my fashion now. And it's a part of me. And that feels almost like very unique

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to me and almost like unique to us, because that's not like black people been doing fashion

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forever. We're the leaders in that. So I think incorporating those parts of you, like your

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disability and especially in a sense where sometimes industries or places or magazines will

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be like, Oh yeah, you can't. It's like, you can still look really good in your wheelchair with

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whatever fit you want. You can pin part of the wheelchair. Like it's incorporating all facets

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of yourself into whatever you like. And whether that's like watching anime or whatever, it's

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all of that stuff. But moving on from there, I just want to ask like, another one is something

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that has inspired me recently is it can, you know, be anything, some music, a show, comic,

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is there anything that springs to mind? Probably then Barbara M. Allen, the film, have you seen it?

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Yeah. I loved it so much because I feel like it's rare that we learn about disability history,

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but when we do, it's from the American lens, but we have a whole rights movement here in the UK

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that people don't really talk about. So it showcased that also love the actor in it. She's

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in Doctor Who as well. And yeah, just see on a set, like all these hundreds of disabled people

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flooding the streets, you know, imitating that those protests, life just, it was amazing to see

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and it really inspired me in the fact that I was like, I want to do things like this as well,

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where I have impact and you can make a difference for our community, which you definitely can.

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I feel like recently it's more just been like, there's been an increase, maybe it's the algorithm,

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there's been an increase on my Instagram and the TikTok of seeing more disabled people doing,

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like, and their milestones, which is just always like either it's people, you know,

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getting engaged, getting married, having kids, even if these aren't really things that I personally

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want, it's still, you know, it's this general life stuff that people celebrate and it's one of

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the things to remind me, like, you know, I can still do regular things. There's nothing, there's

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no barriers, all of it's people having been given an award or, you know, they get a big deal with

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a company or they, you know, release a book, they do a TV show, they do all these big achievements,

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inspires me and it's like, okay, yeah, there's, I can still achieve, like, my milestones, like,

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even if it takes longer or after pause and stop, restart, whatever, I can still do it.

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You know, I do it differently, you know, I, it's one of the things of me reminding myself not to

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compare myself to, like, my non disabled peers who like, there'll be times in the back of my head,

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I'll be like, oh, you know, they've achieved this, they've achieved that. I can't do it the way they've

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done it because there are unfortunately barriers that stop me, but I've still done X, Y and Z,

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you know, I still graduated twice, I, you know, I've done all these good things that actually

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do make me happy and I was like, okay, so it's inspiring to see other people reach those milestones

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and it reminds me that I can still do that. That's great. I really like what you're saying about

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specifically from the disabled lens of stopping and starting because that reminds me of someone

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that spied me recently, her name's Teen Wah, she's like a YouTuber, she does video essays talking about

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kind of different topics and she, she usually does one like once a month, every two months,

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she just disappeared for eight months and she came back and she was just like, sorry, I've been

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gone, but here I am and it was almost that I've just done this and you have to deal with it that

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I really appreciated because again, like, I want to do more content and I think when I started

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and I was looking up like tips, everyone was like, oh yeah, be consistent, post every day,

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post five times a day and I mean, if one, I was like, I don't have the time to do that,

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I got to be paying my bills too, but also just again, as a disabled person, it's, we can't always

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and I think now I've been doing it for a few months, I'm realizing sometimes that I can just

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dip out and come back and people just be like, okay, cool, you're back. So I think that's been

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really nice to know that because again, we, you have to march to the beat of your own drum and that

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it is okay to march to the beat of your own drum. We're moving on from that.

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Swindy, to ask what's one thing that helps you to when you're struggling?

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Okay, firstly, parasympal. I found like my, when I'm struggling, it's normally like a day like,

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okay, this is going to be a bed bound day, we're going to just be in bed, but I make sure like,

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I'm comfortable, the best like I've put like even my curtains are drawn, so I'm not having too much

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light. I'm in my, is it snotty? Yeah. And I've got like a propped up pillar so I can, so I'm not,

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because sometimes I feel like if I'm completely flat, all my joints start to ache. So I need to

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leap propped up, but I have my water, I have snacks, I've got my iPad or my laptop and I'm

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probably either playing with Sims, drawing, watching people game or Twitch. Just anything

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that's like, okay, we're just going to do the things that just make us happy. Just, just

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simulate the happiness, even if we're just feeling really crap and, and like, I'm trying to ignore any

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pains I'm having, having, I'm just comfortable. And I think that's my main thing is like, I'm

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going to be comfortable. I'm not going to think about how like I'm going to be in bed all day and

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that might not be productive. I am being productive because I'm resting. For sure.

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For me, if I'm struggling, it's usually my mental health I'm struggling with,

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in which case family really, really helps me and my sister hanging out or just like workouts and

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exercising. I do sometimes like seated workouts that I just think as you can do from sitting in a

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chair and moving helps and reading and just doing things that I enjoy doing, but also kind of giving

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myself the space to be like, yeah, like you've accepted yourself and it doesn't mean that you're

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not proud to be who you are. If you do just have some days where you're just like, I wish this

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wasn't the case. I wish, you know, I didn't have to book taxis and like deal with taxi drivers and

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have all this and some days I just wish that that could go away a little bit and I could chill.

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And some days with my back really hurts or something. And it's like, the fact that I feel

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this pain and irritation doesn't take away from the fact that like I've accepted myself.

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Self-love isn't always 100%. You're always happy. You always feel great. So allowing yourself to

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have those dips and to just feel a bit terrible sometimes is like, just let yourself be in that

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place and know that it doesn't mean that you don't love yourself. Yeah, I'm with you 100%.

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A big shift I noticed within myself was like, when I got to that point where if I was feeling

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really in pain or really tight, I was like, okay, this is where I am now. And honestly,

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like a big part of that was I don't work full time anymore. So there's not, I noticed without that

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external demand to perform or be whatever. I noticed how much more I didn't care about it. I'll be like,

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oh, okay, I'm in pain. That's my day now. And I think just having that acceptance usually means

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that even when I'm struggling physically, I can just, I have a lot more patience with it and

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tolerance. And I think for me as well, like I usually spend a lot of time inside partially

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because I'm a hermit, but partially obviously because I'm in pain a lot. So I focus a lot on

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simple little pleasures that are around. And I started gardening last year and I've got some

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potato plants growing now. And like I talk to them most days, I go to them, I check they're

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all right. And it's one of those things where I just spend time staring at them and marveling at

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the beauty of nature. And it just helps take me out of it. Because I think sometimes like if I'm

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feeling really bad, I feel very like wrapped up in my own world and my own suffering and sense.

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And sometimes just being able to step out into the garden and just look at these things and be

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like, I can still enjoy this. And I think the beauty of nature is that it's always going to be

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around. Like I'm like my potato plants was going to be here, there's going to be birds singing all

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the time. Fox is like barging into my garden or something like, okay, don't come closer. But

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do you know what I mean? There's all these things that I can always have access to because before

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I always wanted to be out or be with people. And sometimes these things aren't possible, whereas

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my garden is always there and nature is always there and stuff. So that's, I think, yes, it's

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something that's really helped. I wanted to ask if also how your process has evolved over time in

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terms of like self care and taking care of yourself and like we're talking about struggling, is there

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anything that you've changed over the years or things you've shared and been like these practices

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aren't for me? I used to tackle things in kind of an unhealthy way where I would stick to a really

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strict schedule. And if I was following that schedule, I was being very productive. And usually

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I'd be happy as well because I'd be getting things done. But then all it would take is just a day

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not doing the schedule or not following everything exactly correctly to feel really terrible and

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disappointed in myself. And I think I just kind of needed to let that go a bit and let myself

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breathe and let myself to have more space, more periods, to just understand and listen to my body

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more and be like these expectations or things that non-disabled people could stick to. I don't

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think I'll ever fully be able to do all those things and stick to the same schedules and just

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let that go and be like I have to listen to my body and do things my way. And that's completely

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valid. And I know like a capitalist society hates that so much. But I've just got to let that go

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and say this is what I need to do for me and take things a bit more slow here and there.

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I feel like before the self care that at least I was like being taught when I came to like my

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condition was the whole like oh but you need to get some fresh air you need to have a walk you need

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to you know just and there was a time when I felt like it helped then where I was like I I think

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probably because of COVID and for me being stuck inside wasn't actually was making me worse. So I

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did try like once a week just doing a little bit of a walk and that did help like because it became

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a routine and I know once it becomes a routine it doesn't it's not as bad. But I think I'm now at

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this stage now where I know for me the idea of like you know it's basically like light exercise

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that isn't it doesn't work for me that I just really it just doesn't work for me if I you know

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if I do that it will work for me temporarily but I will have the onset of my fatigue and my pain

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afterwards and then I'm like okay well I've just done self care and it's actually not cared for me

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very much. So it's the it's learning what actually helps me and benefits me in the long term.

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Yeah for sure. So for me like it's the smallest thing of like me just having water by myself like

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a big jug of water because I know for me when I'm feeling like really really low even mentally or

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just like physically it does help. I don't know I don't know what's what in water I know what's

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in water but the H2O it works and I do feel like oh okay like it and I don't know what it is but it

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does just perk me up but also it's become a routine that I do need I just need the water I will refresh

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me and even small things of like even if I'm even in my bed for a long time I just make sure that

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I'm just doing like little exercises like you know it's like hand and wrist just to make sure

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I'm not cramping or anything like that and it's small and it's for me it is still self care because

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I'm burying myself so it's just knowing that this is this is my self care that works for me and not

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taking what someone thinks would work. Yeah because doctors can recommend things but like

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not all experiences are like a monolith but also it could be tricky with like

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diagnosis and things like do you do you all have like a diagnosis for your condition? Yeah

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sometimes they can be hard to get and sometimes you could be put into different categories and

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things like that which could be confusing I mean technically mine is like serious progressive

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external polo neuropathy which like if you google you get nothing and I've talked to so many people

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in line in person never seen anyone else with that condition and it's just with diagnosis and

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like we recommend this for this it can get difficult but also with like even little things like going

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for auditions where they're so specific they ask for like cerebral palsy or Down syndrome or like

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the conditions that have a name like someone like me will never be able to go for those things because

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I don't have like a diagnosis that's like no one's going to have like open audition for serious

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progressive external polo neuropathy so it's like sometimes it helps to be more broad and to accept

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that like experiences are on one of the lifts and like some categories in groups are great

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like if people say we recommend these exercises like you were talking about for like wheelchair users

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with this kind of condition and like social clubs for like wheelchair users or deaf people

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or things like that but when it gets really specific it can kind of almost be alienating

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yeah because then you don't find those people so yeah yeah it's tough because I feel like

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I think a general everyone wants to categorize things and yeah with disabilities and this

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includes just general public but also doctors like there's kind of ones that everyone knows about

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and then it trickles down into stuff but it's still a lot of people need to come to understand that

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like because I think you have chronic fatigue syndrome yeah me too and our experiences could

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be completely different things that could help you might not help me vice versa and like I also

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have Crohn's disease and when I first started trying to understand that I was finding other

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people with Crohn's and honestly only looking at people who were like assimilating better if I'm

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being real like there was this one guy followed who was like really muscly and went to the gym

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and I was messaging him for tips and he was like eat this and eat that and I ate that and I was like

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okay my stomach's hit no and I think from that point it took me a while to with self-care it was

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like you're saying I had to have my own personal brand and it was just I think sometimes I look at

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my body like a machine and one that I do love but it's just this works this doesn't work and

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that's that's all it takes and it takes trial and error but from there for me it's just been

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whatever can help like I take lemsip for pain usually because that that just happens to be

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the thing that helps and again there's like I don't know what the science is the same with

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you and like your water but it's just this helps therefore I do it and I think especially now

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because self-care is a bit kind of like monetized a bit where everyone's trying to say okay we're

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going to sell you this self-care and that self-care I'd like I love my bath bombs and I love my

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face masks but it's like you say sometimes for me self-care is just stopping sometimes it's

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wrapping up in my duvet and get my partner to wrap me up so I can't get out because that sensation

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feels good I think it's that taking a step back from the world and then learning what your body

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needs and what your body likes and just understanding that and I think it's easier to do that without

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that almost like external yeah this you need to do this for your condition and you need to do that

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it's just like I just I have to do this for my body and that's kind of it isn't it yeah you mentioned

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that you knew someone else with your condition do you feel like you guys in general know like

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lots of other disabled or like black and disabled people as well

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no no many I mean obviously that event we did was probably only time

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I've met someone who's black and disabled but other than that I've probably only met one other

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person in real life who has chronic fatigue who had chronic fatigue syndrome but they

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were cured they they got better they had a surgeon and then they got better and now they're you know

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that and it was one of those times where I was like I kind of wish I maybe had not known about

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this because then it's like okay now everyone knows that we're two people who have had the same

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thing but this person has like basically come out here and now there's a pressure I'm like oh so you

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know you can get better you can and I'm like I don't want to say it is a bad thing but it's like I

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don't think that's gonna be me but that's not a bad thing yeah like I'm just mean right now I'm I

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don't need a cure I it's not it's not it's it's a way of I just need things to be accessible and

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let me be that's it for sure that's it so yeah I don't know many people unfortunately

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I feel like I know a few people like online I don't I mean my best friend is only because like we

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both met when we were both like able-bodied years ago through Comic Con then I got disabled

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and years later she ended up critically ill as well which is why it's like out of all my friends

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out from my teen years she's the only one like I'm tight with and I'm like okay because we get it but

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more than just knowing people online I think if I go to an event and there are other people like

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even if they have invisible disabilities like I think I have like a sixth sense to find my people

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now and I think there's because I was talking to someone recently I went to this it was like a Black

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Fae picnic where we all dressed up as fairies and I found I just started talking to a couple people

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and then when we got real they both we started talking about disability and I was like oh so

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this is why I gravitated towards you and I think there's something it's hard to articulate but you

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kind of understand because the reality is especially being Black and disabled there's

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quite a heightened level of intelligence and smarts and awareness and empathy I think we have

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to have to maneuver through a world that isn't built for us so I think usually yeah when I go to

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certain spaces I'm always surveying I'm like there's got to be at least one other person like me here

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even if I don't know them just feeling that someone else is in for them to let me know yes

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I can stay here I can have a good time like if I'm the only one in the room I'm like okay maybe

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I'll stay for 10 minutes but I've got my eye on the door you know so yeah I think

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it's the thing though isn't it connected with people online is just the best way especially

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for us because there's so few of us there is I think I've had the experience where it's much

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easier to meet disabled and queer people and I meet tons of disabled and queer people like there's

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there's such a large number of us in the community that happen to also be queer I think there's some

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kind of link there but yeah I'm the black and disabled is something you see slightly less

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I think I only have one really friend I think I identify as like brown and disabled and queer

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but yeah I had that experience too I went to like this butch fem picnic which was really inclusive

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of like including trans people and well just lesbians like it really is just anyone who feels

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like they fit the butch fem type but then I was the only one who like I don't know I could see

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who's disabled and the vibe was so often weird and it was no one approached me yeah I felt so kind

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of like even though we have like two things in common even the black and the queer thing but

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there's this other thing and it's just like it can never be sometimes it's frustrating when

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you get treated that way but I feel like I'm much more likely to be accepted and treated

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without ableism and queer spaces I felt like they kind of get a little bit I think anyone of any

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minority group like you said tends to be a little bit more resilient because you have to face so

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much discrimination and that tends to make people more resilient but at the same time like being here

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with like you too is such a great experience because yeah it is rare and I think also it's not

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just black and disabled it's also black women as well which is great.

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I've got a big juicy question for you too how have you found it trying to form and maintain

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like meaningful relationships people as a black disabled person? Tough you know it was like it

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felt like a chess match when I started to join dating sites they're trying to like balance

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everything was tough because especially on queer dating sites um these the ones I used they weren't

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there many black people or disabled people and so I first started out with you know not having

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my profile I was disabled and kind of I called it rolling out of the closet to people after they

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got to know me more um which didn't end up going well so that I had it on my profile and then what

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I had is there was no one swiping on me I actually swiped all the way through to the end of Bumble

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Bumble said there's no one left within like an age right as long as we could show you it's like wow

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so what I do and I do defend this is I don't say that I'm disabled on my profile and I do

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eventually tell people just because I think there is so much you know ableist assumptions people

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have in their mind when they see a disabled person and like without knowing it almost every non-disabled

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person has that it's so intense that when they meet me and they speak me and they get to see

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them just like a normal person all of that goes away yeah and then I say I'm disabled and they're

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like oh that's actually okay but I feel like still if they were just to see me and see me

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disabled with my hands my wrist fingers in wheelchair they would have swiped so I think if we lived in

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a society where I wasn't ableism everywhere I would have that I was disabled on my profile

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but because we don't I don't I kind of defend that decision but people have been nice afterwards

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and I've had some meaningful connections which has been great and I was surprised by how cool

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people were with it and after they knew and so that's been great especially also in the queer

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scene as well dating I feel like the beauty standards can be a lot higher and like the gay

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and lesbian community so that was tough to deal with but I've made some good ones how about you?

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So I it's kind of interesting because like I've kind of had the spectrum of like dating before

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and after and more so just kind of like before my diagnosis I already had this kind of the

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back of female of like knowing this perception of me as a black woman and and and dating and

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trying to find relationships because for me especially in the very like white dominated

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like society it's kind of like okay I either I don't feel as pretty or there's like a fetish

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attached to it but then once I was disabled then that almost became like the the the cloud

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across people's eyes it's ended like two I don't know maybe three of my relationships

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and when it came to dating apps when I didn't say or show any pictures of my my age or anything

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like that I just got like I guess like a normal amount of swipes likes whatever as just a black

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person on there and it was only when I decided to actually know because when I meet people I'm

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even gonna have my cane or my walking stick so normally I would say like oh yeah have Emmy so

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just means but I always say I have Emmy so this just means right so they don't start to see you

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anything but then I just started adding my picture as like the first thing because for me I was just

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like at this point now it weeds out anyone who I don't want to bother with and then the people

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that actually can see past the aids and can see the person okay I can give you a chance

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but it's kind of just gotten to that point now where I don't want to be seen as someone who needs

378
00:38:04,160 --> 00:38:08,480
help and needs a carer because that's not what I'm looking for I can do these things on my own

379
00:38:08,480 --> 00:38:15,280
I'm already doing these things I you know I just want everyone else wants us just like love and

380
00:38:15,280 --> 00:38:20,160
and you know partnership and stuff like that so it's kind of gone to that point now where

381
00:38:21,680 --> 00:38:28,320
I I'm just doing life and if anything organically happens for me I think the data actually just

382
00:38:28,320 --> 00:38:36,960
they just don't mentally they just don't do good because you just have this you know you're not

383
00:38:36,960 --> 00:38:42,400
getting as many likes if you if you adapt your if you change your pictures or your description so

384
00:38:42,400 --> 00:38:48,480
it doesn't mention something then you see an increase you're like oh okay it's like and at this

385
00:38:48,480 --> 00:38:52,800
point it's just like I'm just living my life I'm not going to cater to someone's prejudice

386
00:38:53,600 --> 00:39:01,280
I'm just going to do me and if someone can see past that then you know I'll see what happens or

387
00:39:01,280 --> 00:39:04,320
thing but now I'm just like I just need a cat yeah I just need a cat.

388
00:39:05,120 --> 00:39:08,400
Cat's always just going to treat you how it wants to at the end of the day it doesn't matter if you're

389
00:39:08,400 --> 00:39:14,160
disabled or not um yeah I think you know it's funny because I've been with my partner for six years

390
00:39:14,720 --> 00:39:21,040
and so before I met them I didn't I didn't have a diagnosis of CFS and I wasn't suffering as much so

391
00:39:21,760 --> 00:39:26,000
I was like completely like invisibly disabled just because I had Crohn's disease and I think

392
00:39:26,640 --> 00:39:30,640
for me then it was hard navigating it because if you look at look to me on the dating app like

393
00:39:30,640 --> 00:39:36,560
you couldn't tell and it is also then I had that struggle of bringing it up but it would say it

394
00:39:36,560 --> 00:39:41,920
all over my Instagram and I remember like hanging out with a guy and he we followed each other he

395
00:39:41,920 --> 00:39:46,480
saw I had Crohn's disease on it didn't say anything and then later on he gave me his phone to like

396
00:39:47,120 --> 00:39:51,120
look at a recipe or something and then I seen he had like Crohn's disease open on Wikipedia

397
00:39:51,120 --> 00:39:56,720
I remember being sad they're like why didn't you just ask me and I think that really almost summed

398
00:39:56,720 --> 00:40:02,560
up in a way I think especially like the English culture of like never asking these things and

399
00:40:02,560 --> 00:40:07,280
then when I met my partners so funny because we we met on Grindel so I was like this is not going

400
00:40:07,280 --> 00:40:11,680
to go anywhere but they were I was cancelling a lot because I was quite ill at the time and

401
00:40:11,680 --> 00:40:16,640
they were just chill and they rang me up and asked what's going on and I told them about it and they

402
00:40:16,640 --> 00:40:22,080
just like were unfazed and I remember being like so confused like my brain could not handle it I was

403
00:40:22,080 --> 00:40:30,000
like someone being decent about my chronic health like but I think even just in the realm of friendships

404
00:40:30,000 --> 00:40:36,720
and stuff I think I felt like loads of people will do anything to avoid acknowledging that you're

405
00:40:36,720 --> 00:40:42,480
disabled and sometimes because I've had loads of confrontations with people because I'm not

406
00:40:42,480 --> 00:40:48,400
doing a Jamaican I can fight like I pull it up and they're like oh well I was waiting for you to

407
00:40:48,400 --> 00:40:52,960
say it and I was just like I think I never understood that because for me as a friend or as someone who

408
00:40:52,960 --> 00:40:59,040
cares you ask about anything and I remember eventually coming to a point where I said I think

409
00:40:59,040 --> 00:41:03,920
at this point if someone cares they will ask and then last year I met like a new friend and the

410
00:41:03,920 --> 00:41:07,360
first time we met up because we've been talking all night and he was literally just he saw my stick

411
00:41:07,360 --> 00:41:11,280
and he was like you're okay walking from here to here do you want to walk so I want to do this

412
00:41:11,280 --> 00:41:18,320
UK ink this and it really reaffirmed in my brain that belief that the people that matter and that

413
00:41:18,320 --> 00:41:24,000
do care will show it without you having to do anything so that's again especially with friendships

414
00:41:24,000 --> 00:41:29,440
how I try and live now it's like I'm not going to entertain anything unless someone's showing like

415
00:41:29,440 --> 00:41:34,160
an active interest because it's also I think for me like I said my best friend she's got

416
00:41:34,800 --> 00:41:39,600
endo and whenever we're hanging out it's you know is this place okay for you can you eat this you

417
00:41:39,600 --> 00:41:44,560
need somewhere with better seating I was like I can do that if I can just ask these questions

418
00:41:44,560 --> 00:41:48,800
even though obviously I don't understand what it's like to have endo and I never will if I can just

419
00:41:48,800 --> 00:41:54,640
just make her feel like she's been listened to and heard and asked those questions than anyone can

420
00:41:55,120 --> 00:42:00,160
and I think that's a rule of thumb I always tell other disabled people to have because it

421
00:42:02,480 --> 00:42:07,440
if I'd had that point of view five years ago it would have saved me so much like wasted energy and

422
00:42:08,160 --> 00:42:14,160
you know busted friendships because I think it is it's an unfortunate fact about a lot of people

423
00:42:14,160 --> 00:42:21,200
and a lot of people can just get away with not asking and pretending that disabilities don't

424
00:42:21,200 --> 00:42:27,200
exist because it doesn't affect them you know might one day but not now but from there I wanted to ask

425
00:42:28,880 --> 00:42:33,760
how can we find a sense of community when we're such an underrepresented group like we're black

426
00:42:33,760 --> 00:42:39,280
and disabled there's not many of us especially in this crazy island with a lot of rain so what

427
00:42:39,280 --> 00:42:45,280
how do you find finding it and what do you do it's tough I think the internet really helps

428
00:42:46,160 --> 00:42:53,120
and I know I really struggled before I had met someone who is disabled especially black and

429
00:42:53,120 --> 00:42:58,560
disabled because I mean you're talking about friends and friendships and things like that and

430
00:42:58,560 --> 00:43:04,080
I had really negative experiences because I experienced being disabled in secondary school

431
00:43:04,080 --> 00:43:10,480
in primary school and the teens in secondary it was very much a just ignore thing and I was

432
00:43:10,480 --> 00:43:17,680
ignored so much I would do things like play these games where I'd walk down a hallway with tears on

433
00:43:17,680 --> 00:43:23,120
my face and you know big bets with myself if anyone was going to stop and say something

434
00:43:23,120 --> 00:43:26,960
or I'd count the amount of words I said in a day and like it'd be less than 10 or something

435
00:43:27,600 --> 00:43:31,520
and I did have some people there that were great but I lost so many friends when I had to become

436
00:43:31,520 --> 00:43:37,440
a permanent wheelchair user and it was just the worst experience ableism from teachers and from

437
00:43:37,440 --> 00:43:45,680
students and it did that play so much and so by now that I've moved to London I really only have

438
00:43:45,680 --> 00:43:51,040
disabled friends it's such a different experience and their friends like you said you can ask those

439
00:43:51,040 --> 00:43:57,520
questions too and they kind of they just get things that no one's really like gotten to the same

440
00:43:57,520 --> 00:44:02,000
degree before like I've been shocked by like how they're like oh yeah I've experienced that too

441
00:44:02,720 --> 00:44:09,040
I'm like wow so it really was like online well I guess I found most people through like work because

442
00:44:09,040 --> 00:44:14,240
I do a lot of work with disability groups but just even online communities you can find so much

443
00:44:14,240 --> 00:44:20,160
validation through them and like in not every school these horrible as mine was and all non-disabled

444
00:44:20,160 --> 00:44:26,400
people never get it and actually terribly but sometimes it really is good to just find those

445
00:44:26,400 --> 00:44:32,960
spaces and those people who just kind of do instantly get it without all explanations so I'm

446
00:44:32,960 --> 00:44:37,280
very glad that I'm no longer in a place like that where I felt like every day was one of

447
00:44:37,280 --> 00:44:42,720
those days where I was having to explain things or feeling really left out just because of who I was

448
00:44:44,880 --> 00:44:52,960
I'd probably say the same thing like the internet for me is probably the only place right now where

449
00:44:52,960 --> 00:44:57,680
you know the sense of community is the easiest way it's just also it's just accessible I feel

450
00:44:57,680 --> 00:45:04,000
like that's another thing I'm realizing that I'm I use the internet probably more because I'm like

451
00:45:04,000 --> 00:45:10,400
I'm at home or I can't physically go to places as often because I need to reserve my energy and

452
00:45:10,400 --> 00:45:16,480
it's just it's easy to create these communities because you know it's for the most part most

453
00:45:16,480 --> 00:45:20,720
people have their phone in their pocket or you know they'll they'll they'll be at a screen at

454
00:45:20,720 --> 00:45:31,440
some point so it's just easy to connect and like create events that just include everyone in some

455
00:45:31,440 --> 00:45:35,840
kind of way like a lot of times I just really enjoy like doing like game nights online it's just

456
00:45:35,840 --> 00:45:40,720
you know even if it and it's normally also like doing games that it's still easy forever or nothing

457
00:45:40,720 --> 00:45:45,280
yeah there's no inclusion in some kind of way like I don't know it's like there's a game called

458
00:45:45,280 --> 00:45:49,600
like Gartik Phone where you just get a prompt and you draw it and then something like so it's

459
00:45:49,600 --> 00:45:58,480
it's easy it's funny you just have a laugh and I'm more and more I'm gravitating towards

460
00:45:58,480 --> 00:46:03,680
online communities which I kind of started to steal away from as I got older from a team because

461
00:46:03,680 --> 00:46:09,200
I grew up online I grew up on Tumblr I got all the on and I was just like I you know I'm now

462
00:46:09,200 --> 00:46:14,560
I'm an adult I should probably talk to people in person now and I got used to that and now I'm like

463
00:46:14,560 --> 00:46:21,920
okay this is this actually works better for me and I can connect with my friends more

464
00:46:21,920 --> 00:46:28,640
yeah I think I'm the same definitely like online there's just so many online spaces and Facebook

465
00:46:28,640 --> 00:46:34,320
groups and I think I've also noticed like I've been trying to be way more politically active

466
00:46:34,320 --> 00:46:40,480
over the past few years and I think especially marry activism with my life I don't want it to be

467
00:46:40,480 --> 00:46:45,360
something I'm like oh let me drop in it's like how do I fit this in into almost like the fabric of

468
00:46:45,360 --> 00:46:52,880
my existence and I'm noticing maybe like politically active spaces tend to have better disability

469
00:46:52,880 --> 00:46:58,960
politics and I think for me then it just means that certain spaces or things it's that understanding

470
00:46:58,960 --> 00:47:03,520
like oh okay I there might not be people like me here but I will be welcome and safe here

471
00:47:03,520 --> 00:47:09,200
and kind of having that expansion I think I'm really lucky that because my partner is able

472
00:47:09,200 --> 00:47:15,040
bodied it's just really good my health and my cousin's able body too really great like I just

473
00:47:15,040 --> 00:47:21,360
happen to have these people most like fall around me but online still is something I rely on and

474
00:47:21,360 --> 00:47:25,600
even something I think it's like you're saying sometimes you're just seeing another black disabled

475
00:47:25,600 --> 00:47:31,920
person being online we don't even have to interact but seeing them living their life online just doing

476
00:47:31,920 --> 00:47:36,640
whatever even if it's just you know I made dinner tonight or I went for a walk I think even just

477
00:47:36,640 --> 00:47:42,400
seeing people do the mundane makes me feel very connected and I always feel like there's this like

478
00:47:43,040 --> 00:47:47,200
I feel like like what's that the hunger game salute they do like we do that across the internet

479
00:47:48,560 --> 00:47:53,680
I think just seeing people live in their lives and they sometimes they share about a struggle

480
00:47:53,680 --> 00:47:57,200
they had but then there's also sometimes it's just like yes I got back and I got take away or

481
00:47:57,200 --> 00:48:03,440
something I don't know it's just that honesty of their life I really appreciate but I just wanted

482
00:48:03,440 --> 00:48:11,680
to close with one final question I just what's one thing you would say to like a young person who

483
00:48:11,680 --> 00:48:17,520
shares your disability I'm saying young like I know 10 years younger it could be you it could be a

484
00:48:17,520 --> 00:48:20,800
young you or it could just be someone you know going through things that you might have gone

485
00:48:20,800 --> 00:48:31,200
through what would you say I would probably say it's okay to have the struggle it's okay

486
00:48:31,200 --> 00:48:40,080
that things are hard it is it obviously it's it's it's one of those things of remembering like

487
00:48:40,080 --> 00:48:48,160
you're allowed to also grieve and you know just coming from someone who you know did have you

488
00:48:48,160 --> 00:48:55,120
know you do grieve your past life and for me if there's anyone that has like a chronic illness

489
00:48:55,120 --> 00:49:00,880
that's quite similar to mine it would be like you are allowed to grieve and there's not one you

490
00:49:00,880 --> 00:49:07,360
know grief in in any kind of way it's not just there and then it can have happen again five years

491
00:49:07,360 --> 00:49:12,960
you've accepted but you know you'll get you might get another part where you're like ah I do miss

492
00:49:12,960 --> 00:49:20,640
this though it's okay to you know you can still be on the right track you know the the new path

493
00:49:20,640 --> 00:49:25,200
but it's okay to be like okay but I still do miss this and I think it's about allowing yourself to

494
00:49:25,200 --> 00:49:30,800
feel whatever your body's to allow yourself because I think being able to grieve you can process it

495
00:49:31,440 --> 00:49:36,960
and then you can use that process to that's okay I have felt like I've lost this but what have I

496
00:49:36,960 --> 00:49:43,360
gained what am I gaining now it's a new perspective I'm getting it's uh it's you know it's a new

497
00:49:43,360 --> 00:49:48,880
dress sense because I have to adapt my mobility ace in my fashion it's it's those sort of things

498
00:49:48,880 --> 00:49:56,160
so I would say yeah like allow yourself to grieve whilst also knowing that you can embrace this new

499
00:49:56,160 --> 00:50:04,080
you I'd probably say to little simi just know that things are possible there're going to be so many

500
00:50:04,080 --> 00:50:09,840
things that make you think things aren't possible you will be kicked out of theatre club for being

501
00:50:09,840 --> 00:50:15,680
disabled when you're 12 you know the film course will be able to enforce you to strap a camera to

502
00:50:15,680 --> 00:50:21,920
your head for not much reason and that will make you think it'll make you give up on your dream

503
00:50:21,920 --> 00:50:26,640
but I would just say to keep fighting for it because you can be a performer you will be one

504
00:50:27,360 --> 00:50:31,920
and that even though you don't see it on screen you don't see people like you you will be that

505
00:50:31,920 --> 00:50:36,640
person in that space that other people will then see and then know that it is possible as well

506
00:50:37,360 --> 00:50:43,360
so if you don't see it there then go and be that change and be that light and don't let anyone

507
00:50:43,360 --> 00:50:49,840
know ablest teachers or no one who just doesn't understand you in the way that you are tell you

508
00:50:49,840 --> 00:50:55,200
that you can't do something because you are powerful in the way that you do things it's

509
00:50:55,200 --> 00:51:02,720
different but it's unique and don't listen to the people who tell you that it's wrong the way

510
00:51:02,720 --> 00:51:09,600
it's okay get a bit emotional because I'm you're facing much of it but just know that at the end

511
00:51:09,600 --> 00:51:18,320
what it will be is a transformation where you realise that it's uniqueness yeah that's amazing

512
00:51:19,040 --> 00:51:22,800
yeah I would just say to young me or anyone else young that

513
00:51:24,640 --> 00:51:30,880
there is always a way that you can adapt things to do things for you I think the world often is

514
00:51:30,880 --> 00:51:36,960
like no you can't do that no I don't want to do that and like I feel like the past 10 years of my

515
00:51:36,960 --> 00:51:43,120
life has been understanding how much of that is just people being ablest and horrible and lazy

516
00:51:43,120 --> 00:51:48,240
there's a lot of my hobbies that I've been able to transform to work for me now and there's been

517
00:51:48,240 --> 00:51:55,040
ways I've been able to work that work better for me now I think it's it's going to be a tough journey

518
00:51:55,040 --> 00:52:00,800
and there might be a lot of kind of advocating for yourself but also you have every right to be

519
00:52:00,800 --> 00:52:06,240
like I'm tired of advocating for myself let me just stop I think there's nothing wrong with that

520
00:52:06,240 --> 00:52:12,160
because it is it's quite a lot I think and especially like being black and disabled sometimes you

521
00:52:12,160 --> 00:52:17,200
might feel like you're the only one in a space so I think you're entitled to whatever you need but

522
00:52:17,200 --> 00:52:22,240
you're also entitled to step away and I think the greatest gift you have is being able to

523
00:52:24,240 --> 00:52:29,600
imagine something that a lot of people can't imagine I see I've seen throughout history

524
00:52:30,160 --> 00:52:33,920
black disabled people be at the forefront of movements and imagine new worlds for us that

525
00:52:33,920 --> 00:52:39,200
loads of people said couldn't happen and I have no doubt you know my kids and my kids kids are

526
00:52:39,200 --> 00:52:43,920
going to be able to benefit from things that other black disabled people doing now that we're

527
00:52:43,920 --> 00:52:50,000
doing now and I think there's such a beauty and a power in that and there's also such beauty and

528
00:52:50,000 --> 00:52:57,680
power in just choosing yourself when so much around you says you can't and even when choosing

529
00:52:57,680 --> 00:53:03,040
yourself it's just choosing to step away that's incredibly radical and powerful and I think there's

530
00:53:03,040 --> 00:53:09,920
so much beauty in the small things that we will do and to embrace that yeah so we've come to the

531
00:53:09,920 --> 00:53:14,720
end of today's conversation I want to say thank you so much to you both for sharing it's been such

532
00:53:14,720 --> 00:53:19,440
amazing experience I'm trying to keep my tears in because I don't want to cry it's been really

533
00:53:19,440 --> 00:53:34,400
really nice and thanks so much for our listeners yeah it's been really great so thank you thank you so much for having us